One Feminist's Report on Her Breast Cancer, Beginning with Semi-diagnosis and Continuing Beyond Chemo, w/ a side of polycythemia thrown in **You don't have to be Jewish to love Levy's rye bread,
and you don't have to have cancer to read Cancer Bitch *** Cancer Bitch comes to you from S.L. (Sandi) Wisenberg in Chicago

Blut und Boden

So. I've got a new disease. Or condition. It's rare, only five people per million are diagnosed with it annually. I think "people" might mean Americans, or rather, US residents--because "Americans" includes people from the Arctic Archipelago to Tierra del Fuego. But I'm dancing around the point. Attentive readers of this blog will recall that I have too many platelets in my blood (AKA essential thrombocythemia). I've found out I also have too many red blood cells. The official term is polycythemia vera . I have the non-hereditary gene mutation, JAK2, which is found in 95 percent of the people who have this. My hematologist (you know you're in trouble when you have a hematologist) told me yesterday I probably had it, and she looked at my blood results today and confirmed it. I make too many things, I said to the hematologist yesterday--starting with cancer, which is the production of too many cells in an uncontrolled way. She said, Yes, you make too many things. The first-line treatment for this, she told me, comes from the 13th century. Leeches? I asked, because I'd seen an article in the New Yorker about their use but hadn't read the piece yet. Not leeches, she said, but you get a phlebotomy. You go to LifeSource and get a pint taken out. You can't donate this pint because it's filled with too-thick blood. Where does it go? I asked. Probably into a biohazard bag and then to a landfill, she said. I thought of my blood seeping into the earth. Blut und Boden.

It seems a shame to waste this blood. To spill it. If Venus flytraps snap up hamburger meat, couldn't they sup on some blood? Could blood be used as plant food? (Alas, I am finding through the 'net that flytraps feed on bugs, not hamburger meat.) Believe it or not, someone else has thought to ask about feeding blood to the flytraps. Unfortunately, you can't tell if the answers have merit.

So the plan is to give a pint on Tuesday (the first time I could get an appointment) and then two weeks later, then go to Fancy Hospital to get my blood tested, talk to the doctor, and probably have two more sessions two weeks apart. From there I would probably get my "prophylactic phlebotomy" every one, two or three months.

I need to rid myself of this thick blood because otherwise it maybe maybe maybe could cause blood clots, stroke, heart attack. I am a funny person to have this disease because it most often strikes men over 60. I have learned what the signs of a blood clot are and that you can get an ultrasound to show if you have one. If this "venesection," as the Brits call it, doesn't work, then there's Plan B, which involves chemotherapy. Mild. In the form of a pill called hydroxyurea.

There are other funny (strange, not ha-ha) things. My hematologist asked if I had itching. I said, mostly after taking a shower, and she said that's a symptom. It's funny because it's a phenomenon I had noticed but I hadn't thought it meant anything. I also had noticed that my gums were bleeding after flossing, and that's a symptom, too. I also have hot flashes, which is not news to attentive blog readers or anyone who has been in a room with me lately. While flashing, my face and ears turn red. The doctor said that the phlebotomy might help with the redness and sweating. So that's good news. (I keep thinking "lobotomy" and have to remind myself that one is brain and one is blood. No ice picks for Cancer Bitch.)

In case you want a leech of your own, click here. Note that leeches are non-returnable.

I was just reading a page on the ADA's website about a condition in which people have to lose blood, and why the red cross won't take their blood. It's because if they donate, that's free, and if they don't, they have to pay for it. Therefore, they are better of money wise if they donate. And the Red Cross doesn't pay donors. So it says that taking the blood of people who HAVE to donate blood is a violation of their policy.I think that that's pretty stupid, myself.

Jonah,This is very bizarre. I quote from the ADA site: "The American Red Cross, which controls about 45% of the nation's blood supply, does not currently accept donations from people with known hemochromatosis. Everyone agrees that the blood is safe and of high quality. There is no risk of passing on a genetic disease through blood transfusions. But the Red Cross has a long-standing policy that potential donors are not allowed to receive direct compensation for their donation (beyond the usual orange juice and cookie). Because people with hemochromatosis would otherwise have to pay for their therapeutic phlebotomies, they would in effect be getting something of value for being able to donate for free. Thus the Red Cross has ruled that such donations violate their policy."

But I'm willing to pay (to have my insurance pay) for the phlebotomy. So where's the freebie?

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